2014-02-12T11:16:54-06:00 2013-09-30 521511275 Raffa PC 1899 L Street NW Suite 900 Washington DC 20036 990 2012-10-01 431131436 Lupus Foundation of America Inc LUPU 2023491155 2000 L Street NW No 410 Washington DC 20036 Sandra C Raymond 2023491155 2014-02-12 1 Frank H Smith P00639053 2028225000 2014-02-11 2012 2015-11-30 17:44:51Z Sandra C Raymond 2000 L Street NW No 410 Washington DC 20036 11244456 0 X www.lupus.org X 1977 DC Improve the quality of life for people with lupus through research, education, and advocacy. 22 22 47 274 35930 -2000 12916423 9657896 1478866 1301854 -73422 39201 187603 67292 14509470 11066243 741817 929717 0 0 3823115 3976631 57350 60450 2298326 7122905 8253690 11745187 13220488 2764283 -2154245 9968535 7078484 3584737 2867434 6383798 4211050 X The Lupus Foundation of America, Inc. (the Foundation) is dedicated to improving the quality of life for all people affected by lupus through programs of research, education, and advocacy. 0 0 5288126 364467 Public information and education: This program aims to increase public awareness and understanding of lupus and its health consequences. In 2013, the Lupus Foundation of America implemented several bold and exciting initiatives including a new brand identity and voice for the organization, the Help Us Solve the Cruel Mystery National Tour, and re-designing the Foundation's website. The Help Us Solve the Cruel Mystery National Tour is a multi-city education tour, featuring a 45-foot bus with interactive exhibits that show people how lupus impacts the lives of individuals and families. In conjunction with the bus tour, patient and continuing medical education (CME) events were conducted simultaneously. To-date the tour has generated nearly a half million bus impressions, 85 million media impressions, and 30,000 individuals have signed the petition that asks Congress to support lupus research.This year, we debuted a powerful redesigned website with a new Q&A format and information grouped to meet specific audience needs. Our web visits exceeded five million visits and we surpassed 100,000 likes on Facebook, becoming the largest social media community. Through Facebook alone, we secured more than 30-million impressions for lupus related content.In addition to these important strategic initiatives, we continued to engage celebrities to support the cause, enhance ongoing communications programs and the Foundation's signature events, and core public awareness initiatives, such as Lupus Awareness Month. 1896082 89717 604070 Network support and services: The Foundation provides resources and technical assistance to its network of chapter affiliates, field offices, support groups, and other interested partners to serve the needs of lupus communities around the nation. During 2013, the Foundation provided on-going organizational development support and training to Chapter CEOs and board members, which included individualized capacity building services, leadership of national advocacy activities as well as training for state advocacy initiatives, leadership development through a national conference and CEO Roundtable, and specialized trainings for support group facilitators. The Foundation also provided tools and materials to aid the Foundation's network of 22 chapters and more than 230 support groups, which served more than 540,000 people in 40 states. The Foundation continued to provide on-site and remote interim executive leadership support for chapters that experienced a CEO transition, as well as leadership in the search process. The Lupus Foundation of America's event Walk to End Lupus Now(formerly known as Walk for Lupus Now) brought together nearly 70,000 individuals during 2013 in 60 cities across the nation to learn how to better live with lupus, and raise awareness of the disease and funds for the cause in their local communities. 1209371 810000 Research: The Foundation's National Research Program continues to attack the problems that have plagued the acceleration of lupus research and understanding of the disease for decades. The Foundation aggressively pursues strategies to greatly increase federal, state, and industry support for a robust medical research effort on lupus, facilitates strategic collaborations to address issues that are critical to progress, and provides greatly needed direct financial support to researchers through its privately-supported peer reviewed research grant programs to support scientists who are seeking a cure for lupus.Since 2009 the Foundation has been implementing specific initiatives to tackle barriers to new, safe, effective and tolerable treatments for lupus. In that effort, the Foundation has created an online portal that trains health professionals on instruments used in clinical studies. In 2013, the National Institutes of Health joined more than 3,500 clinical trial doctors from 53 countries in using the portal, demonstrating its value to improve outcomes in clinical trials. The Foundation also initiated a project to pool clinical trial data (de-identified) where participating companies have grown each year. Findings were presented at major scientific meetings of medical organizations and federal agencies. Another initiative, the Lupus Foundation of America Center for Clinical Trials Education (LFA-CCTE) which serves as a central resource for individuals and their loved ones who are interested in learning more about participating in clinical trials, was visited by more than 15,000 people. With the help of the nation's largest network of lupus activists, we successfully advocated Congress to provide more resources for lupus as follows:- Secured an additional $3.6 million, for a total of $26.6 million, to support the National Lupus Patient Registry conducted through the Centers for Disease Control and Prevention (CDC), becoming the largest-ever lupus research study. - Advocated successfully for the continued support of lupus research through the Department of Defense (DoD) Peer Reviewed Medical Research Program, which in 2013 awarded $1.6 million to two biotechnology companies - to help develop new treatments for lupus. To date, the DoD has provided $14 million for lupus research, including funds for a study that developed the first diagnostic test that helps physicians determine a diagnosis of lupus.- Secured an additional $1 million, for a total of $5.5 million, for The Lupus Initiative, which launched in 2013, to train more doctors on recognizing the signs and symptoms of lupus and for earlier diagnosis.In 2013, the Lupus Foundation of America provided new funding to award research grants that address issues of critical importance for people with lupus, including expanding our understanding of pediatric lupus, neuropsychiatric lupus, lupus nephritis, and stem cell research issues. The Foundation also awarded summer fellowships to students, launched and awarded the first Lupus Insight Prize, in partnership with two other lupus organizations, and created its Career Development Award. 1080150 17500 287367 Professional relations and education: The Foundation's professional education programs are designed to translate the latest research findings into public health recommendations for physicians, other healthcare professionals, and their respective organizations. In 2013, the Foundation launched a new national continuing medical education (CME) program which was available nationally to the community of providers who treat and care for people with lupus. This live program traveled to ten cities in the U.S. between December 2012 and September 2013 reaching a multidisciplinary group of health care professionals in each location. The program focused on the latest research on lupus treatments and issues related to lupus and cardiovascular disease, cancer, and bones.Since launched in 2011, the Foundation's continuing education program specifically for the non-MD health care professional community with more than 3900 nurses and over 580 pharmacy/pharmacy technicians have completed the two-credit course. The Foundation also helps to educate health professionals by participating in annual scientific meetings, collaborating with the Department of Health and Human Services Office on Women's Health, the Office of Minority Health, and several institutes and offices at National Institutes of Health (NIH). The LFA works with its Medical/Scientific Advisory Council to address issues of importance to the medical community that provides care to people with lupus. The Foundation also reached the medical community through the Health Care Professionals Section of the award winning Lupus Now magazine. This year the magazine was distributed worldwide to more than 150,000 medical professionals from varying specialties, as well as patients and other interested consumers. 858158 12500 45950 Patient education and support: The Foundation provides education, support and other assistance to individuals with lupus, their families and caregivers. In 2013 alone, we responded to more than 60,000 inquiries from people seeking lupus information and local resources through our national health educator line and our national network of local chapters. This year, we established the Lupus Foundation of America Caregiver Task Force to help set priorities and provide feedback on programs, resources and services that assist caregivers as they help their loved ones better manage their own health. The Foundation also debuted new printed educational materials and web content, produced audio podcasts, sponsored teleconferences and symposia on living with lupus, and circulated Lupus Now, the only national magazine focused exclusively on lupus, to over 150,000 medical professionals, individuals with lupus and members of the public.For the fourth year, the Foundation conducted its national teleconference series and its "15 Questions" programs, which feature lupus thought-leaders answering questions on a specific topic submitted by individuals with lupus from around the country. This year teleconferences were conducted in English and Spanish. The two programs generated more than 2,500 participants and submitted inquiries, and more than 30,000 visits to the programs' archive pages on the LFA website. 1938308 30000 333317 10331887 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 1 0 0 1 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 1 49 0 1 47 1 1 1 0 0 0 0 1 1 0 0 0 1 0 X 22 22 0 0 0 0 0 0 1 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AK AZ AR CA CO CT FL GA HI IL KS KY ME MD MA MI MN MS NH NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WI WV X X Seung-Ae Chung 2023491155 2000 L Street NW 410 Washington DC 20036 Peter M Schwab 5.00 X X 0 0 0 Carol Ann Petren 5.00 X X 0 0 0 Keith Brunini 5.00 X X 0 0 0 Conrad Gehrmann 5.00 X X 0 0 0 Janine Allen 5.00 X X 0 0 0 Cindy Coney 5.00 X X 0 0 0 Joseph Arnold Esquire 1.00 X 0 0 0 Judy Barlin 1.00 X 0 0 0 J Reeve Bright 1.00 X 0 0 0 Karen B Evans 1.00 X 0 0 0 Toni Freeman 1.00 X 0 0 0 Gary Gilkeson MD 1.00 X 0 0 0 Brian Kaplan 1.00 X 0 0 0 Merrillyn J Kosier 1.00 X 0 0 0 Marguerete A Luter 1.00 X 0 0 0 Susan Manzi MD MPH 1.00 X 3000 0 0 Steve Rabinowitz 1.00 X 0 0 0 Katherine A Ruffatto 1.00 X 0 0 0 Kathleen Ruiz 1.00 X 0 0 0 Christine Smith 1.00 X 0 0 0 Marjorie S Susman 1.00 X 0 0 0 Fran Tsimoyianis 1.00 X 0 0 0 Randall Winston 1.00 X 0 0 0 Seung-Ae Chung 40.00 X 161745 0 19960 Sandra C Raymond 40.00 X 249371 0 26465 Mary C Schwarz 40.00 X 163374 0 4509 Mary T Crimmings 40.00 X 173454 0 12941 Leslie Hanrahan 40.00 X 158507 0 16797 Laura L Leale 40.00 X 153884 0 11669 Duane Peters 40.00 X 134201 0 17135 Patricia M Hart 40.00 X 113573 0 9729 Kimberly A Cantor 40.00 X 119550 0 5496 Kristine M Hoagland 40.00 X 106206 0 9828 1536865 0 134529 10 0 1 0 GLS PO Box 86 Minneapolis MN 55486 Postage and mailhouse services 2689080 The Kerry Group 1078 Headquarters Park Drive Fenton OH 63026 Education tour management 312586 Production Solutions 1953 Gallows Road Vienna VA 22182 Postage, lettershop & mailhouse services 302771 GMMB Inc 3050 K Street NW Washington DC 20007 Communications and media relations 220859 Crisalis LLC 800 Research Parkway Suite 338 Oklahoma City OK 73104 Web-based training site 200815 10 295787 517693 8844416 3494701 9657896 Training/consulting 900099 561931 561931 Membership dues 900099 561228 561228 Publications 900099 172870 136940 35930 Convention revenue 900099 5825 5825 1301854 24304 24304 8847 8847 28501 1219 13604 1219 14897 0 14897 14897 106250 517693 163390 -57140 -57140 Miscellaneous 900099 73274 73274 Sublease income 900099 40177 40177 List rental income 900099 2134 2134 115585 11066243 1265924 35930 106493 919717 919717 10000 10000 1255942 940825 217588 97529 2123012 1977299 71738 73975 105442 105442 253555 225553 11024 16978 238680 208076 17953 12651 833554 795606 37948 98592 82671 15771 150 30575 30575 60450 60450 1215059 1098715 25466 90878 82726 64122 18604 140958 133002 3039 4917 59621 57356 1192 1073 565065 544954 10585 9526 368797 301945 3272 63580 760723 559751 5706 195266 2964 2852 59 53 19363 19363 253122 246486 3493 3143 44861 34828 9382 651 Postage and mailhouse 3178817 1605037 17406 1556374 Printing & publications 451713 396161 1156 54396 Miscellaneous 147180 2126 144870 184 13220488 10331887 590275 2298326 X 3882695 1835688 22558 2024449 631364 216129 2785446 2905199 777473 875758 330224 334865 2401 73823 38888 1750159 514176 1279151 1235983 3847696 1251252 32746 32746 208211 187664 9968535 7078484 1527395 1059016 916816 760149 1140526 1048269 3584737 2867434 X 2786796 2800516 3489702 1303234 107300 107300 6383798 4211050 9968535 7078484 -2154245 -18503 0 X 0 1 X 1 0 X 8829657 9365277 9188501 12916423 9657896 49957754 8829657 9365277 9188501 12916423 9657896 49957754 3641210 46316544 118085 72437 68194 73816 75462 407994 13513 42198 57897 137806 73274 324688 50690436 5979796 0.91370 0.90940 X Schedule A, Part II, Line 10, Explanation of Other Income: Miscellaneous - 2008 Amount: $ 13,513. 2009 Amount: $ 42,198. 2010 Amount: $ 57,897. 2011 Amount: $ 137,806. 2012 Amount: $ 73,274. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 85793 85793 13047562 13133355 806668 201667 0 0 622558 659179 734392 806668 2822797 4234196 73988 62527 39951 85793 262259 155640 164795 183598 201667 705700 1058550 107300 481 481 107300 107300 535 535 107300 107300 483 483 107300 107300 1076 1076 107300 107300 1076 1076 107300 0.00000 1.00000 0.00000 0 0 770463 160513 609950 725922 327212 398710 253774 26451 227323 1235983 Capital lease obligations 26806 Deferred lease incentive 720130 Deferred rent 301333 1048269 X 11201340 -18503 153600 135097 11066243 0 11066243 13374088 153600 153600 13220488 0 13220488 Description of Intended Use of Endowment Funds: Part V, Line 4: The earnings on the donor-restricted endowment are for general operations. The Foundation's Board approves the spending of the earnings on the endowment fund on an annual basis when it approves the annual budget. Description of Uncertain Tax Positions Under FIN 48: Part X, Line 2: The Foundation performed an evaluation of uncertain tax positions for the years ended September 30, 2013 and 2012, and determined that it has no material uncertain income tax positions, and accordingly, it has not recognized any liability for unrecognized income tax. 1 Europe (Including Iceland & Greenland) 0 0 Program services Consulting 11000 North America 0 0 Grantmaking 4000 0 0 0 0 0 0 15000 0 15000 0 0 0 0 0 0 Procedure for Monitoring Grants Outside the U.S.: Schedule F, Part I, Line 2: All grant recipients are required to sign the Foundation's grant award agreement and meet the following conditions: - Meet all applicable and relevant guidelines regarding the use of animal and human subjects - Meet all institutional policies and local, state, and federal regulations governing the conduct of research - Submit Internal Review Board approval from the grant recipient's institution - Complete and submit the "proposed budget" - Adhere to the Foundation's policy of Inventions and Discoveries - Notify the Foundation prior to any publication or professional presentation based on Foundation-funded research project - Acknowledge the Foundation prominently in any and all publication or presentation as the lead organizational sponsor of said research - All funds are used exclusively toward expenditures for the said research, and no amount of the research grant funds can be used to finance indirect costs - Keep complete and accurate records on the receipt and disbursement of all award funds, and may not co-mingle any funds from other sources. Must retain all such records for a period of at least two years after the expiration date of the Agreement and the Foundation has the right to review such records upon request. In addition, all grant recipients are required to submit interim and final reports with a grant installment payment tied to report submission. The Foundation's Medical Scientific Advisory Council Research Subcommittee chair reviews the interim and final reports to confirm that the investigator achieved the original study objective. X X X X X X X 1 John Mini Consulting Inc 707 Savannah Road Lewes DE 199581521 Direct mail 0 702223 60450 641773 702223 60450 641773 AL AK AZ AR CA CO CT DE DC FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY NY Butterfly Gala 623943 517693 106250 7500 93390 62500 623943 517693 106250 7500 93390 62500 163390 -57140 1 Albert Einstein College of Medicine 1300 Morris Park Avenue Bronx NY 10461 131624226 501(c)(3) 60000 Research grant: Collective Data Analysis Initiative Brigham and Women's Hospital Inc 4 Black Fan Circle Boston MA 02115 042312909 501(c)(3) 70000 Career Development Award Childhood Arthritis and Rheumatology Research Alliance PO Box 20067 Palo Alto CA 94309 203451370 501(c)(3) 50000 Research grant: Registry of Pediatric Patient Data Cincinnati Children's Hospital Medical Center 3333 Burnet Avenue Cincinnati OH 45229 310833936 501(c)(3) 120000 Research grant: Neuropsychiatric Lupus LFA DCMDVA Chapter 2000 L Street NW Suite 415 Washington DC 20036 237448063 501(c)(3) 31950 Program grant LFA Greater Ohio Chapter 12930 Chippewa Road Suite 4 Brecksville OH 44141 341229407 501(c)(3) 10002 Program grant LFA New Jersey Chapter 150 Morris Avenue Springfiled NJ 07081 222107053 501(c)(3) 26450 Program grant LFA North Carolina Chapter 4530 Park Road Charlotte NC 28209 561487119 501(c)(3) 7190 Program grant LFA North Texas Chapter 15660 N Dallas Parkway Dallas TX 75248 751561127 501(c)(3) 6895 Program grant LFA Philadelphia Tri-State Chapter 500 Old York Road Jenkintown PA 19046 237080555 501(c)(3) 5299 Program grant The Pennsylvania State University College of Medicine 500 University Drive Hershey PA 17033 216000376 501(c)(3) 120000 Research grant: Pediatric Quality of Life University of CA at San Francisco 4150 Clement Street San Francisco CA 94121 942829914 501(c)(3) 50000 Research award: Lupus Nephritis Trials Network University of Florida 1600 Archer Road Gainesville FL 32610 596002052 501(c)(3) 120000 Research grant: Stem Cell University of Pittsburgh School of Medicine 200 Lothrop Street Pittsburgh PA 15261 250965591 501(c)(3) 200000 Lupus Insight Prize: Neutrophil Extracellular Traps 14 0 Research grants 2 10000 Procedure for Monitoring Grants in the U.S.: Part I, Line 2: Schedule I, Part I, Line 2: All grant recipients are required to sign the Foundation's grant award agreement and meet the following conditions: - Meet all applicable and relevant guidelines regarding the use of animal and human subjects - Meet all institutional policies and local, state, and federal regulations governing the conduct of research - Submit Internal Review Board approval from the grant recipient's institution - Complete and submit the "proposed budget" - Adhere to the Foundation's policy of Inventions and Discoveries - Notify the Foundation prior to any publication or professional presentation based on Foundation-funded research project - Acknowledge the Foundation prominently in any and all publication or presentation as the lead organizational sponsor of said research - All funds are used exclusively toward expenditures for the said research, and no amount of the research grant funds can be used to finance indirect costs - Keep complete and accurate records on the receipt and disbursement of all award funds, and may not co-mingle any funds from other sources. Must retain all such records for a period of at least two years after the expiration date of the Agreement and the Foundation has the right to review such records upon request. In addition, all grant recipients are required to submit interim and final reports with a grant installment payment tied to report submission. The Foundation's Medical Scientific Advisory Council Research Subcommittee chair reviews the interim and final reports to confirm that the investigator achieved the original study objective. X X X 0 0 0 0 0 0 0 0 0 Seung-Ae Chung 159245 0 2500 0 0 0 14790 0 5170 0 181705 0 0 0 Sandra C Raymond 237371 0 12000 0 0 0 22050 0 4415 0 275836 0 0 0 Mary C Schwarz 160874 0 2500 0 0 0 0 0 4509 0 167883 0 0 0 Mary T Crimmings 170954 0 2500 0 0 0 12364 0 577 0 186395 0 0 0 Leslie Hanrahan 156007 0 2500 0 0 0 12288 0 4509 0 175304 0 0 0 Laura L Leale 153884 0 0 0 0 0 7986 0 3683 0 165553 0 0 0 Duane Peters 133201 0 1000 0 0 0 12626 0 4509 0 151336 0 0 0 X 3436774 Fair market value X 75 29426 Fair market value X 9 28501 Fair market value 0 1 0 Form 990, Part VI, Section A, line 7b The chapters have the authority to vote on any proposed changes by the Board of the Directors to the Foundation's bylaws. Form 990, Part VI, Section B, line 11 The Foundation hires an independent accounting firm to prepare the Form 990. A draft of the Form 990 is first reviewed by the CFO and the final draft of the Form 990 is reviewed by both the CFO and the President & CEO. Before filing the form with the Internal Revenue Service (IRS), a copy of the final draft is distributed to the Finance Committee and the form is reviewed and approved via a telephone conference. Once approved by the Finance Committee, a complete copy of the Form 990 is provided to all members of the Board of Directors before filing the form with the IRS. Form 990, Part VI, Section B, line 12c At the Foundation's board meeting in the fall, the conflict of interest statement and questionnaire are completed and signed by each officer, director, committee member and key employee. All conflict of interest statements and questionnaires are reviewed by the President & CEO and CFO who note any actual or potential conflicts. There have been no conflicts noted during the year. Form 990, Part VI, Section B, line 15 The Executive Committee of the Board (EC) conducts an annual performance evaluation of the President & CEO and recommends salary level changes to the Board of Directors for approval. The recommended changes are based on the most currently available comparability data from the Management Compensation Survey Study published jointly by the National Health Council and the National Human Services Assembly. Once approved, one of the members of the EC, generally the Chairman or the Treasurer, notifies the CFO of the new approved compensation arrangement for the President & CEO. All other key employees receive an annual performance review by the President & CEO and approved salary increases are documented on each individual's annual performanace evaluation form. Form 990, Part VI, Section C, line 19 The Foundation makes its financial statements available to the public upon request and by posting its annual report and providing a weblink to Guidestar on its website. The federal Form 990 and all other governing documents are available upon request. Lupus America Communities 2000 L Street NW Suite 410 Washington DC 20036 900870868 Supporting organization DC 501(c)(3) Line 11c, III-FI LFA 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0